A Dozen Tips for Navigating NICU/PICU

Neonatal and pediatric intensive care units can be intimidating places. Unless you are in the field of pediatric medicine, you are way out of your element and it can feel like they all know more about your baby than you do. I am going to share twelve tips that can make ICU time easier on you and your baby.

1. Understand your baby’s condition. Go ahead and google reputable sources. In the two hospitals we did time in, I got the clear impression that the doctors did not want parents reading up on the internet. They felt that it filled their heads with unwarranted hope and misinformation. I disagreed. Reading about cutting edge technologies or other children’s miracles and successes helped me to formulate questions that needed to be asked and to stay encouraged. It also helped me to stand up against doctors’ suggested procedures and care orders that I was uncomfortable with and not convinced about.

2. Try to be at your baby’s bedside for rounds (when the doctors change shifts they walk around the floor and share information about each child’s current status.) Every change or happening from the night before or planned for that day will be discussed amongst the doctors and nurses. This is your chance to be apprised of every detail concerning your baby. Some NICUs and PICUs do not welcome parent eavesdropping or participation during rounds, but don’t be deterred. Ask for a clear explanation of why you should not be there to hear the details of your child’s day. You are your baby’s primary advocate. It is imperative that you are able to hear and understand what decisions are being made and why.

3. If you do not already have a blog, set up a Caring Bridge type of website (easy and free) to communicate your baby’s updates to family and friends. Using social media to broadcast messages means you only have to say (or rather, type) the information once and everyone can read the news. It also provides a wonderful way for those who care about you and your baby to let you know they are thinking of you.

4. Ask the neonatologist or attending physicians for verbal notification of all written changes to your baby’s medication orders and care orders. Make sure you understand why the change is being made. Some hospital units are very open and will not mind you reading your child’s daily sheets which include all doctors’ orders. Other hospitals, or even other units, may not allow you to view your child’s paperwork without an attending physician present. It can be difficult to get a “date” with the attending physician to read up on changes. So, to avoid confusion about care and meds, I found it easier to ask to be notified of changes. If you find your request is not being honored, go higher up the chain. It is your right to know every detail of your baby’s care.

5. If your baby will be camping out at the hospital for a couple of weeks or longer, ask that physical therapy be provided to the extent that your baby’s condition permits. If your baby will not be fed by mouth for any period of time, request therapy to maintain oral abilities and interest. It may seem odd to focus on things like this when your baby is very sick, but it is important.

6. Bring your baby’s favorite music cds, a sound machine, crib mobile, hanging toys—whatever you can—to his hospital room. This is tough to do at first because it feels like admitting that your baby is not just zipping through. Once you get over that, you’ll be glad you did it. Your baby will appreciate hearing music instead of just the monitor alarms. Any positive stimulation is a good thing.

7. Be aware that you have choices concerning your baby’s feedings. You can breastfeed your baby if you want to. If you are told that you cannot feed because your baby is fluid restricted or must have all of his fluid measured, ask for your child to be weighed before and after breastfeeding to determine the amount of milk ingested. If your baby needs a higher calorie milk, you can use whatever formula you prefer including Organic Similac (which the hospital most likely has) or Baby’s Only Organic. If you are told your baby will be getting corn oil added to his diet, you can insist that a healthier oil be used. We agreed to organic olive oil. I would recommend requiring that no new “foods” be added to your child’s diet without your notification and approval.

8. Get to know your baby’s primary nurse. She will know everything that goes on with your baby and it is important to be comfortable with her. If you cannot build a good rapport with her, ask for a different primary to be assigned to your baby. A good primary nurse can make a huge difference in the care your baby receives. If the unit your baby is in does use not the primary nurse model, make daily notes of the nurses who care for your baby. You can refuse specific nurses if you feel uncomfortable with any of the care provided to your baby.

9. Purchase some front-snap/closure onsies and sleepers for your baby to wear in the hospital. These are the easiest to put on over and around wires and tubes and the easiest for nurses to break into for vitals checks. Seeing your baby dressed can actually help you to feel better and your baby needs to soak up those good vibes.

10. Ask about support resources. Is there a Ronald MacDonald house or family room (or the equivalent) nearby, are free long-term parking passes available, can breastfeeding moms get free food trays, what religious services are available, can long-term patient parents get cafeteria discounts, can hand/foot printing or casting be done?

11. Don’t hold your baby down to help with a procedure. In fact, if your baby is a newborn, do not be involved in anything that will be uncomfortable for him. Do not be in his sight or let him hear your voice during any procedures. Your baby does not have a built up sense of comfort by your presence like a toddler would. You do not want your baby to associate any discomfort or fearful feelings with you.

12. Keep a journal. Write down names of nurses, doctors, medications, and procedures. Write down your feelings, your questions, your hopes, and your sorrows. Things blur together in the hospital and it might matter at some point that you remember things accurately.

Your Turn
Do you have some good advice for parents whose children are in NICU or PICU? Please share in a comment or let me know if you have posted on this topic and I will link to you.

Lisa, over at Finnian’s Journey, shared these sage words in a comment on the NICU Tour post,

“I would just add that new parents shouldn't be afraid to advocate for their baby in the NICU. When you're surrounded by so many authority figures in white coats, plus dealing with post-birth hormones and fatigue and perhaps a surprise diagnosis of Ds, it's easy to forget that you're actually this child's parent and that you have rights. Do your homework. Not every procedure is absolutely necessary, and some aren't even necessarily in your baby's best interests.”

Cori's post: Begging to Bring Joey Home
Lisa's posts: Advocacy Starts Early
                 Hospital Stay/Learning to Eat
Sasha's post: Our Heart Journey: Things I've Learned

Nursing Tips

Nursing can be a frustrating experience for both baby and mother when it doesn’t go smoothly. For some newborns there are obstacles that must be overcome or mitigated before they can successfully breastfeed. It is important to have realistic expectations in order to not become discouraged and give up. It can take up to 4 or 5 months before some babies reach the turning point and are able to nurse without special support or guidance. The key to achieving a breastfeeding relationship is patience and persistence.

For a mother who wants to breastfeed, there are few things more emotionally difficult than not being able to get it to work. The ideas I am going to share with you come from some of my own painful experiences. My daughter was born with significant cardiac issues and spent the first four months of her life in the hospital. She was both bottle fed and fed through a nasogastric (ng) tube that went up her nose, down into her stomach. Later she was fed through a g-tube that was surgically placed in her stomach. Three times during her hospital stay she was not allowed milk via mouth or tube for days and lived on nothing but an I.V. bag for nutrition. But, despite all that, she learned to nurse, never quite perfectly, but well enough.

Feeding Snags
Lots of things can interfere with a baby’s ability to nurse. Perhaps your baby has a lack of strength and stamina due to a cardiac issue, or maybe her low tone is making it hard for her to get the hang of latching on and swallowing. If your baby is in the NICU and you have been discharged from the hospital, it is even more difficult to establish a nursing relationship.

For whatever reason, if your baby can not breastfeed from the start, you will have to accept an alternate method of feeding as a backup. In most cases this will be the bottle, but for some it means an ng tube or a g-tube. Don’t stress that the secondary feeding method will ruin your baby’s ability to nurse. You’ll just have to work around it.

Mother’s Little Helpers
There are several things you can try to facilitate nursing. Me, I was so desperate that I tried them all. Some were very successful and others not so much for me and my baby, but that doesn’t mean they won’t work for you.

A Lactation Consult—As soon as you see that your baby is having trouble latching or swallowing, request a consult with the hospital’s lactation support person. Having a pro help you with positioning and such may be all you need to get things going.

Oral Stimulation—Give your baby some oral stimulation prior to trying to breastfeed. Make sure your hands and nails are scrubbed clean before touching your baby’s mouth. Stroke your baby from her mouth upward to her cheeks. Use a gentle downward stroke on the outside of your baby’s throat to encourage the swallowing reflex. Rub your baby’s gums, top and bottom, starting from the center and moving to the side and then back to the center. Stroke the corners of your baby’s mouth, once per side, in an arc starting from the top center and working down to the bottom center. Just before presenting your nipple, put your finger pad on your baby’s tongue and gently push it down from the roof of her mouth. When you feel her begin to cup her tongue to suck, quickly remove your finger and insert your nipple. This is easier said than done (trust me on this one) but it is worth a try.

The Dancer Hold—Whether breast or bottle feeding, you can use the Dancer Hold to support your baby’s cheeks and encourage latching and sucking. The Dancer Hold is a special hand placement that is complicated to describe but a lactation consultant can show you exactly what to do.

Positioning—A baby with low tone needs to feel fully supported while she is trying to eat. You can do this by swaddling your baby although this might put her to sleep. You could also try different nursing positions as long as you are supporting your baby’s body from head to toe. My favorite position to accomplish this is side-to-side (though this is probably not something you can do in the NICU). I place my baby on her side on a slightly inclined pillow and lie next to her. This way she is fully supported and does not have the weight of the breast on her. She can also control the flow of milk easier from this position and I have free hands to help her if necessary.

Nipple Shield—A nipple shield is a temporary solution designed to help train a baby with latch difficulties. You can use the shield over your nipple to make it sturdier, thus helping keep your baby’s tongue in position. Your baby will not lose the nipple if she is unable to secure or maintain a latch. These are not one size fits all and sizing is based on your baby’s mouth size not your nipple size.

SNS Feeder—The Supplemental Nursing System made by Medela can be used to teach your baby that milk comes from your breast if she is unable to get a good enough latch to cause you to let down. It is also helpful if your baby just doesn’t seem to know what to do at the breast. The hospital can provide you with the kit and show you how to use it. Basically you fill the bottle up with milk and then hang it upsidedown taped to your shirt or skin above your breast. There is a tiny tube that the milk flows through that goes into your baby’s mouth (along with your nipple). When your baby makes any attempt to suck (or even if she doesn’t) you can allow milk to flow into her mouth. The flow rate is adjustable and if your baby gets your milk to kick in, the feeder will let off on its flow accordingly. When I used this with my daughter she spat out my nipple and sucked the milk through the little tube like it was a straw.

Pumping—Sometimes the timing is all off when you go to nurse. Maybe you are so ready that you are leaking and your baby is overwhelmed by the flow. Maybe the milk isn’t there and your baby’s latch and suck is too weak or uncoordinated to get it going. In either case you can try pumping prior to nursing to resolve the problem. You can pump until the flood subsides or pump until you get a let down and then offer your baby the breast.

Ambience—There are a couple environmental things you can do to make nursing easier. First off, make sure you are comfortable because nursing a baby with low stamina or low tone can take a while. Have your boppy and a bunch of pillows handy, and a bottle of water for you. Turn the lights down but not off. Bright lighting will make your baby close her eyes and then it’s zzzz for her. The same thing will happen if it’s too dark. If your baby is too sleepy to eat you can try changing her diaper or massaging her to wake her back up. Also be careful to position your baby with her head up a little bit so that the milk will not back-flow into her ear canals. Make sure you burp your baby often since babies with eating difficulties tend to take in more air which can make your baby feel prematurely full and uncomfortable.

Protecting the Nursing Relationship
It is important to keep your baby aware of breastfeeding, or in other words, to protect the nursing relationship when you must use a secondary method of feeding. This means that you must make your baby associate filling her tummy with the smell, taste, and feel of the breast.

Bottle Feeding—Attempt to breastfeed your baby prior to bottle feeding her. Allow 5-10 minutes of practicing latching and swallowing. If your baby can’t get a good latch or a few good swigs after 5-10 minutes, you should try the bottle. You don’t want to frustrate your hungry baby or have your sleepyhead drift off again. Until your baby makes the connection between you and nursing, you should have someone else offer the bottle, if possible.

Tube Feeding—If your baby will be having a tube feed, position her as if she were breastfeeding with her face against the skin of your breast. This way she can practice nursing while her stomach is filling up. She will learn to associate feeling full with the breast. You can even do this if your baby is fluid-restricted and not allowed to feed directly from the breast. Just be ready to take her off if she does manage to get a good latch and starts drinking. (I know that seems mean, but remember her belly is filling up and she is learning how to use her mouth, so it isn’t as bad as it sounds!)

Continuous Tube Feed/I.V. Bag—If your baby is on a continuous tube feed or an I.V. bag, ask the doctor if every so often you can simulate the nursing experience by holding your baby in the nursing position, skin to skin, while offering her a pacifier dipped in breast milk, water, or even a couple drops of sucrose. This exercise will train your baby to continue to accept oral stimulation and to associate it with you/your breast.

Pumping—The big thing you have to do to protect the nursing relationship is keep your milk supply up. Not so easy when nursing isn’t consistent. You and the pump might be spending a lot of time together. Most hospitals have super pumps but if you will be pumping at home you may want to consider buying or renting a really good electric pump. (Many insurance companies, including some medicaid plans, cover part of the pump rental fee if your baby is in the NICU.) There are two things you can do to make pumping easier. You can take pictures of your baby nursing (or pretending to nurse ;-) and put them in a little photo book that you can look at while you pump. This visual stimulation of seeing your baby nursing on you will encourage let downs while you are alone in the pumping room. Also, pumping right after you have practiced or simulated nursing with your baby will help you to get a good let down. Pumping on one side while you are nursing on the other is even better yet, but might be a bit tricky in a NICU or without someone’s help.

NICU Nursing
Trying to breastfeed your baby in the NICU can be tough. Make sure you let the doctors and nurses know that you want to breastfeed your baby and don’t let them discourage you. While the NICU staff will agree that breast milk is optimal they may seem like they prefer it coming from a bottle. They may be concerned about your baby’s efforts (energy expended) to nurse if she has a cardiac issue or they may just not be that experienced with breastfeeding babies with Down syndrome. They may insist that they need to keep track of the exact amount of milk your baby is ingesting. If this is the case, suggest that they weigh your baby before and after you breastfeed to determine the amount of milk your baby received. Do not be thwarted. Discuss a nursing plan with the doctors that will be medically safe for your baby.

When It Just Won’t Work
If you are unable to establish a breastfeeding relationship with your baby, remember that almost all the same benefits can be had by pumping your milk and feeding it to your baby via a bottle or tube. The bonding that occurs with breastfeeding can be developed by creating a special routine that is just between you and your baby. You could do baby massage, kangaroo care time (where you have your baby lie against you skin to skin), or a lullaby and snuggle time each day. The oral motor tone that is developed by breastfeeding can be worked on with oral stimulation techniques that your baby’s speech therapist can teach you.

Your Turn
If breastfeeding did not come easy for your baby, would you share your experience on what worked for you and how long it took your baby to get the hang of it?

NICU Tour

Many a baby with Down syndrome will tour the Neonatal Intensive Care Unit (NICU), even if only for evaluation and observation. That means you will get to spend some time there too.

What Your Baby Might Look Like in the NICU

Evaluating your baby might call for a series of tests and monitoring that will require wires and tubes that are attached in various ways to your infant. It can be pretty daunting to see your baby this way, and your post-delivery hormones won’t help. Here is a picture of what my daughter looked like the first time I saw her there. (Click on it for a large view.) I burst into tears. I will explain below what all the attachments are.




Some newborns have difficulty maintaining body temperature, so the NICU staff may place the baby in an open metal and Plexiglas bassinet that has a heater above it. To properly monitor body temperature, the baby is naked save for a diaper, and a tiny thermometer is stuck to the baby’s chest or stomach area. That is the gold circle on my daughter’s tummy.

Oxygen (O2) support is provided for a baby who is not maintaining the correct O2 saturation. There are several types of O2 support but in this picture you see a high-flow O2 nose cannula. To continuously monitor oxygen saturation levels, a tiny monitor inside a band-aid type material is placed against the infant’s foot or hand. It is then wrapped again in stronger material which you can see on my daughter’s left foot.

Our hospital’s better-safe-than-sorry practices required that our baby receive intravenous antibiotics until a blood test confirmed that no bacterial infection was present. This is what you see wrapped in tape on her right hand.

This is a good time to mention that general hospital staff are very quick to react to neonatologists’ and NICU nurses’ requests, so test results and specialists appear in record time. (Not always so in PICU, but that is another post.)

It is important to monitor the baby’s heart rate and this is done by sticking small monitors on the baby’s chest area. These are the little white and blue stickers on either side of my baby’s chest.

What you do not see pictured here is a nasogastric (NG) feeding tube that may be placed in your baby’s nose and the bili (spa) lights that might be placed around your child if his bilirubin levels are too high (the cause of jaundice.)

With numerous monitors attached to your baby, you can expect to hear them sound off every now and then, usually for no bad reason. If the O2 saturation monitor isn’t tight against your baby’s hand or foot, it will sound an alarm. If your baby wriggles around and loses a heart monitor sticker, you will hear an alarm. If you are holding your baby away from the bassinet, the temperature monitor might complain loudly. You will get used to these bells and eventually stop the mini panic attacks every time you hear them.

While all of this looks scary and overwhelming, none of it is painful (ok, except that initial IV prick) and none of it indicates that there is anything wrong with your baby.

Who You Will and May Meet in the NICU

Neonatologist - This doctor is specially trained to evaluate and treat newborns’ medical needs. In addition, neonatologists are experts in using the equipment that is designed specifically for the tiniest patients. There will be a neonatologist in or nearby the NICU at all times. (Again, not true with the PICU equivalent, but that’s another post.)

NICU Nurses - These nurses are specially trained to provide excellent medical care to newborns. They will provide general care to your baby, administer any necessary medication, and monitor vital signs. Along with caring for your baby, they will provide care, support and education to you as necessary. If your baby will be in the NICU for more than a couple of days, a primary nurse may be assigned to him. This nurse will make it her business to know everything that goes on with your baby. She can tell you how much he ate, peed, and slept today, as well as any changes in medications or other medical updates. A good primary nurse will get to know your child’s rhythms and can spot trouble before anyone else does.

Your Pediatrician - Your baby’s pediatrician will likely do rounds at the hospital and will check in to see how your baby is progressing. While your baby is in the NICU, the pediatrician does not call the shots but she can make suggestions or provide you with explanations of (read "decode") what the neonatologist may have already told you.

Respiratory Therapists - NICU respiratory therapists will handle all aspects of your baby’s O2 support to ensure the doctors orders are carried out to specification. They will drop by every few hours to check the equipment and your baby’s breathing.

Specialists - Any number of specialized physicians may stop in to check over your baby. We were visited by cardiologists, pediatric surgeons, our daughter’s heart surgeon, a gastrointestinal (GI) doctor, and many more.

Social Worker - A hospital social worker will stop by to see you in your recovery room or in the NICU to give you information about local Down syndrome groups, Medicaid, SSI, and many more things you will probably not be ready to hear (not because the information is bad but because things are already mind-boggling, and remember, those hormones aren’t helping.)

PCAs - Personal Care Assistants - otherwise known as "baby rockers" are sometimes called in by a busy nurse to soothe a crying baby whose mother isn’t readily available. PCAs provide only non-medical care in the NICU and you can request that they not be placed with your baby, if for any reason you prefer that.

NICU Pros and Cons

Most hospitals pride themselves on their well-staffed, state-of-the-art NICUs, so you can be assured that your baby is receiving the best care the hospital has to offer. The staff can be very knowledgeable and encouraging, and you may find it helpful to have this much support as you figure out your newborn.

Some hard parts about having your baby in the NICU would be that there is very little privacy in the NICU due to the setup (which is designed so that the nurses can see every baby at all times.) It can be frustrating and difficult to breastfeed your baby there even with a privacy screen that a nurse will set up for you. If a baby nearby yours is having a procedure, you may be asked to leave the NICU for a while. Visitors are limited and in some NICUs, children under a certain age are not allowed in at all. Once your baby enters the NICU, he may have to prove he can eat a designated amount of milk or formula every three hours before he can be discharged. Not being able to hold and snuggle your baby without a bunch of stuff attached just plain sucks. And my personal worst thing about NICU was being discharged from the hospital before my baby and having to go home without her. The separation was painful and I felt as though I had no say over my own newborn child.

Doing time in the NICU can be tough, but remember it is not forever. You are strong, and you and your baby will get through it.